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rabbit10 (@rabbit10)

Anyone here dealing with peripheral neuropathy?

Neuropathy | Last Active: 2 days ago | Replies (2028)

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@bobsconnect

I have autonomic/peripheral neuropathy caused by GPA/Wegeners (vasculitis) for 6 yrs. I take gabapentin for the pain and cymbalta for the anxiety that goes along with it. I’m seeing a rheumotologist at Mayo Clinic in Scottsdale, AZ for these and he has also prescribed 50mcg fentanyl patches which has helped immensely. The combination does have side effects, mainly dizziness, which I deal with because of the pain relief benefit. The numdness does go along with neuropathy. That is the next most difficult obstacle. Trying to do anything, especially small is very frustrating. Buttons, zippers, coins, etc. are a nightmare at times. However, I have other health issues to deal with as well. More meds and doctors. It appears as though I will be dealing with this for the rest of my life. I turned 65 last Oct 2015.

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Replies to "I have autonomic/peripheral neuropathy caused by GPA/Wegeners (vasculitis) for 6 yrs. I take gabapentin for the..."

It is frustrating when you can’t do a lot for yourself and I’m not dealing with a neuropathy anymore but I have really really bad arthritis in both my wrists and in my knees and I’m on letrozole for the breast cancer issue I have. The letrozole causes the pain in my legs and muscles. I’m on the Gabapentin to help the hot flashes but I started taking 800 milligrams of magnesium and I think that’s helping more than the Gabapentin I’ve noticed how busy I’ve been but I’ve also had vertigo in the past and thought maybe that was part of that I am calling my doctor Monday to see if I can go off the gabapentin and see what happens.I have also started using some essential oils that a friend of mine gave me her sister-in-law has pain due to breast cancer and other forms of cancer and she’s been using this mixture of essential oils with coconut oil and her pain has subsided dramatically so I have started doing that also.I hope at some point everything lights up because I just am not the person I was before I dread going to bed I tried getting out of bed if I sit down it takes me forever to get up because of the pain it’s ridiculous you would think that they would come up with something else to help without all these bad side effects yes I’m glad to be alive

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You shouldn’t have to live with that much pain. bobsconnect mentioned that his doc put him on a fentanyl patch. If I were you I’d ask about that as an option. I’ve been given fentanyl but only for procedures and it can provide major relief. Of course its a synthetic opioid so they try to steer you away from it. Gabapentin to me is next to useless other than as a sleep aid. Hang in there.

Thanks for your reply grandma41 would mind sharing your essential oil formula? I would like to try it.

Please be careful with the patches. I was on them for a year when I needed
to refill them. The pharmacy’s that are around us were all out. In two days
I went through DT. No a good experience! If you see you have a few let
please make sure you refill. I didn’t take it anymore because of what I
went through. What I’m on now don’t work as well, but good enough. I hope
you get the relief you need.

salena

salena, I tried around for the Duragesic 50mcg/hr patches which for me stick better and dispense the med well. Other brand not so much. I found them at Walmart, however the pharmacist told me you have to be standing there when their shipment comes in or you are SOL. It goes extremely fast and it’s first come first served. 
I have been getting my fentayl Rx filled at CVS, but they are not my insurance co.s “preferred” pharmacy?? So my co-pay is more, $35. Medicare is fine. However, no one else carries that brand. My doctor is a 75 mi round trip (Mayo) so they can only mail my Rx directly to me every month (federal law). I physically have to go down once to drop it off, and again to pick it up, if their order is in. CVS does text me when it is filled but they won’t even accept my Rx until the actual day of. Getting your pain meds is going to get even harder because of the black market and some drs over prescribing. Feds are clamping down.

I had burning, tingling numbness in my feet and buttocks back in 2008. I was diagnosed with lumbar spinal stenosis and tried many meds and physical therapy. Nothing helped so I had a L4/L5 laminectomy in 2010. The burning, tingling numbness continued and again I tried Gabapentin and a prescription topical cream. When that didn’t helpI went to Johns Hopkins Neurological Department in 2012 and after extensive testing they told me that I would have to live with the pain. In 2015 I saw a different neurosurgeon and he recommended another L4/L5 surgery. After that surgery, I had some relief and now have burning pain and numbness only in my left foot and lower leg. I take 900mg of Gabapentin daily. It helps some and I take Tramadol when the pain is strong. I actually have pain flare ups that last for several days when I am on my feet too long. My pain is increased when I stand or walk but I still have the ability to walk.

Does anyone relate to this? Any other things to try?

Welcome to this discussion @robertlclark. I think a lot of people can relate to what you are describing, especially @kmintx @johnwburns @bobsconnect @luladavis.

I know this message is rather buried in this thread, but I hope you can offer some thoughts to Robert about his ongoing pain and neuropathy issues.

Hello bobsconnect thank you for your reply. The cause of my peripheral neuropathy is unknown and I also have restless legs syndrome. They both just came out of nowhere. With the neuropathy I have the pins and needles in legs and arms and numbness in my hands. You are right, it is a pain sometimes trying to do things with your fingers. Right now I use a TENS machine for the neuropathy pain but doesn’t help the numbness. I take requip and tramadol for the rls which I believe helps the neuropathy as well. Putting a heated oad under my legs and prop them up with a pillow seems to help too. The other thing that bothers me is the unsteadiness when walking that sometimes occurs. Thanks for your post it is good to know how other people are dealing with this disease.

Too bad they cannot go after those who abuse the law rather than the ones just trying to relieve their pain. I used to take Opioids. One month I was going to be on vacation and out of state. I tried to get my script filled two days early to no avail. I finally had to change my travel plans so I would be near a drug store somewhere near where I was traveling. I only had to drive 200 miles from where our plans initially were for us to be staying. Inconvenienced? Heck yes!

You use medical Cannibis am I correct?

Nancy Shermoen~

Yes

I also have autonomic/peripheral neuropathy caused by chemotherapy in 2006. It has progressively gotten worse during the last 3 years. So far lucky that I have the numbness and not the shooting pains. However, when you can’t feel your feet, it’s difficult to walk without falling frequently. I have PN in the first joint of my fingers, but can still do buttons, zippers, etc. If/When I can’t do those things, I will be researching the adaptive devices that will allow me to be continue to be as independent as possible. Best of Luck .. ps I will be 69 this month. I also have other health issues and agree that we will be dealing with some level of impairment going forward